Well it has been a crazy week full of tests and doctor appointments. I apologize ahead of time for the long post, but it has been quite the long week. Monday I started off my morning with a 7am CT scan down at Hopkins to check to see if the chemo has had any effect on the tumors – primarily the lung. Then I went to the primary care doc and found out I had a staph infection. Monday afternoon I went to acupuncture and then to the support group.
Tuesday morning at 7:30 I saw the oncologist to get my test results back. The tumors in the lungs have not changed in size. Which is good news and bad news – It could mean the chemo is holding the cancer at bay for now (at least in the lung) He confirmed the malignant lymph nodes. Then I went to another doc to have a Thoracentesis (fluid in my lungs drained). The fluid appeared to be consistent with cancer cells and they sent it to be biopsied.
Miraculously on Wednesday I did not have any appointments. We had a “Screw Cancer” Happy Hour for work. We are now doing it once a month in both Columbia and Baltimore City. We only had a few people, but it was a good turn out and at least I got to talk to each of them.
Thursday was a bad day. I think the news was starting to hit me and just was too much to handle. I hate telling everyone the news and watching their face fall as they realize the enormity of the situation. Plus, I was just (still probably am) at my rope’s end of handling this never ending emotional roller coaster. A good friend at work realized how bad I was doing and talked to me for a while and convinced me that I needed to talk to a professional. He drove me to my church and sat with my while I talked to one of my priests. It was good to just vent and cry and let all the feelings hang out without having to try and make sure I was saying the politically correct thing or beating around the bush. With their help I realized that my moods were just all over the place and probably needed to have my medication adjusted. I called the psychiatrist and that afternoon I went to see him and he tweaked my meds. It only took a little arm twisting for me to call the doctor.
Friday morning started by a visit to the Gastroenterologist to get the results of the endoscopy and other tests I had had done. I found out that while they found no tumors or obvious lumps in my stomach the biopsies were malignant for cancer cells in the stomach lining. Joy, Joy, just another place the cancer has invaded. Anyone keeping count of the number of organs in my body now housing cancer? They also confirmed that I have moderate gastroparesis (slow moving of the digestive track) and gastritis (irritation in the stomach) Both of which are adding to the nausea which is always present. They believe the previous chemo and radiation has caused the damage to the stomach. The doctor ordered a bunch more tests, but I have decided I am done with tests. NO MORE NEEDLES or tests that could come back as bad news.
Friday afternoon I went to see a new specialist at Hopkins. Actually he was the pulmonologist /oncologist that drained the fluid in my lungs. We had a great discussion about my options and for the first time in a long time I felt like my doctor was finally getting it and hearing me. He told me the cold honest truth and he did not sugar coat it and he told me what the treatment options were and what he would recommend, but he also told me he understood if I chose to do nothing. He confirmed that I could have as little as 2-4 months if I choose to do no treatment (less if I get another pleural effusion or sick), but he suggested a new protocol that could buy me as long as a year. We talked about tests and side effects and surgery, what to expect with the progression of the disease and much more. I will spare you all the details since this already a very long post. But in the end I left the office with a big decision to make – to treat or not to treat. It is very important to me that I spend the rest of my time here on earth on my terms and have the best quality of life. Last month I stopped the infusion chemo because I could just not handle the side effects anymore. So now I have to decide what I can handle and what is just too much.
On Tuesday I decided that I wanted to visit my sister in Missouri before I get any sicker and I arranged that afternoon to go to visit them for thanksgiving. One of my biggest regrets is that I will not be able to watch my nephews grow up and I want to spend as much time with them as I am able.
After the doctor’s appointment I went back to the office and talked to my co-worker who has become quite a sounding board and with whom without I don’t know if I would be fairing as well as I am. We talked for over an hour about my options and my feelings and just the facts of life as they are these days.
Friday night I did not get much sleep. My brain was going a thousand miles a minute and all the options were spinning in my head. Saturday morning I got up and journaled for a while and wrote down the pros and cons of each of the options and I made a decision. I am going to go back on chemo. It is the middle option of the high dose, low dose or no chemo choices. Supposedly the side effects will be less than before. Some nausea, like that is a new thing (did I mentioned I had to run out of church today to vomit?), lethargy, mouth sores, and neuropathy. But in the end I decided I have to try, I can always change my mind and stop at anytime, but I need more time. Not that I feel it would be giving up if I stop treatments, but I feel like I have not played all my cards yet. I have decided against radiation, surgery and the bone marrow biopsy. I am going on meds to help my lungs, kidneys and liver and will continue with the acupuncture.
I feel better after making this decision – very much at peace with it. I know that this is entirely up to me and everyone including my new doctor that will support me in whatever decision I make, but for now I am going to try the chemo. I will call in the morning to find out when I will start – I am sure he will want me to start right away and I am not sure I want to have it done before I go away on Tuesday. Yet another decision to make. I faintly remember when the only decision I had to make each day was what hat matched my outfit, which color socks to wear, or what flavor tea to drink – oh to go back to those days. I hope to have an easier time this week and would like to say no more doctors or visits to the hospital, but I know that will likely happen so maybe I only wish for one visit.
Thanks for taking the time to read this very long post and thanks to all the prayers and love from all. It truly makes a difference.
Oh – I almost forgot – I found out late Friday that the infection is indeed MRSA and they switched my antibiotics and I will be looking like a freak on the airplane wearing a mask.